I have been in some type of pain related to my TOS since March 1995. I know this was the month that I started feeling pain, since it was when my son was born.

I have had partial rib restructuring both sides and the left minor pectoral muscle detached. My surgeon said that my nerve goes through my muscles like spaghetti. So when I am stressed or anything else that causes my muscles to tighten / tense up my left arm gets real bad.

For along time I had little or no symptoms in my right arm after the rib removal on the right side, but recently it has been playing catch up with the left side.

Right now my right arm has that tingly, funny sensation not as bad as the left arm, but every week it gets worse and worse. I can feel all the muscles on the right side tightening up. I feel the cramps from my right middle chest up through my shoulder, up my neck. It has been like this all weekend.

My left arm is not cramping up but, it has an ache, burning sensation from my finger tips to my shoulder. It has this sensation or others 24/7. I have been wearing a workout glove and basketball sleeve on my left arm because it helps deaden / overload the nerves so that the pain changes into something that I can deal with. When I have to go to the bathroom bad my left arm goes crazy, after I go to the bathroom it my left arm drops back to normal pain / numbness / burning sensations.

I am currently taking 3 medicines for my TOS. I am taking Ultams, Tylenol 3 and Zanaflex. I am currently only taking 2 mg of zanaflex every 8 hours, if I try to increase the dose, I am to tired to do anything. I took Lyrica 75 mg for a month and saw no improvements in my symptoms.

I also go to Physical Therapy every three weeks and they do traction on my arms and a thing called Astym. Astym helps the nerves move.


I went to the Cleveland Clinic and was told that the only thing I could do is small things to reduce the symptoms but that there was nothing they could do. The Cleveland Clinic did refer me to a local pain clinic at a local hospital, but after two injections of Motrin in my upper shoulder area the Pain doctor said that there was nothing he could do for me.

Can anyone refer me to a good TOS Doctor, my TOS symptoms are getting worse and I am not sure how much longer, I will be able to work and / or deal with this pain.

[partial rib restructuring both sides and the left minor pectoral muscle detached]

How long ago was your surgery/s?
Why partial rib and not all the rib?

[nerve goes through my muscles like spaghetti]
This might be the main cause, but something else must be a factor for the increase in pain.
the rib stump rubbing or regrowing?
and scar tissue increasing?

Might be worth a second look/opinion with a TOS dr.

The surgeries were 8-10 years ago. The entire ribs were removed, the partial rib restructuring is what the Surgeon called it.

I think that stress is a major part of it. I am in a stressful job and any stress at work or home makes it 100x worse.

I saw Dr. Kelso at the Cleveland Clinic TOS clinic about a year ago and she said that all I could do was things to ease the symptoms and things to reduce the triggers.

Before that I saw Dr. Atasoy in Louisville, Ky. and he is the one that told me about wrapping my arm to reduce the nerve sensations.

I would love to find a TOS doctor to talk to and see if anything can be done to help me.

The Veterans Hospital in Huntington, WV did the surgeries.

What PT do you do? Can you detail a bit more?

I have done most of the different types of PT. The last PT I did was a year ago and I was doing upper body core strengthen under the care of a occupational therapist. She was doing stretches, deep tissue massages, heat and Astym on me.

We found that besides the stretches, the PT could make my symptom worse at times. We went 4 weeks 3 times a week with the PT and one day when I was doing the upper body core strengthen exercises my symptoms went from 2-3 to a 8-9 and all the progress that we had made was lost. Following that episode we are very careful about the PT that I do and currently I do chest, shoulder and arm stretches daily when able. Usually after PT I hurt more than when I arrived at PT.

The only PT I do with the Occupational Therapist now is heat, Astym, arm traction, deep muscle massage when needed. I am also doing a stretch to help my right shoulder movement. I have developed limited motion in the shoulder and do cylinder stretches to help with the limited motion.

Did you do any neck or breathing exercises? The latter might be particularly helpful for muscle tension.

No i have never done any breathing exercises for my TOS

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Hi, I've had TOS since 2003. I had my surgeries with Dr. Donahue in Boston. He did my surgeries when nobody else would. I'm still recovering from the surgeries and get disability. Right now I'm doing everything I can to "heal". I highly recommend him as a surgeon, he seems to take on the "difficult" cases that nobody else is willing to risk and he and his nurse are extremely nice! Plus, Boston is a beautiful city.

Surgically, it seems that you could still have a right side pectoralis minor release and anterior and middle scalenectomies. Plus you could also have scar tissue removed from the the bracial plexus/nerve roots. So more surgery seems like it definitely could be an option for you.

On the left side, the nerve pain sounds like it is likely damage to the Long Thoracic Nerve, but also because certain activities aggravate it, that you still have some compression going on, so surgically they could do some things to give you further relief/reduce compression.

The anterior scalene, middle scalene, and top rib form a triangle that the brachail plexus nerves run through. If the triangle is too small because the scalenes are tight, then the nerves are compressed and this causes the pain. Then, the nerves also run under the pec minor and that is another place of possible compression.

Here are some things that I think might help in the mean time to help with the pain or possibly instead of having more surgery:

1. This is the easiest. Get a 4" cervical collar (order off amazon) and wear it at night. It will help stretch out the scalenes and give you more room in your toracic outlet.

2. Take some aspercream and rub it on the sides and front of your neck at night. Then place a heating pad for a while under the cervical collar to further stretch/relax the scalenes. Also, hot bath with clove essential oil (antiinflamitory) and epsom salt followed by massaging mustard oil into the neck to relax the scalenes. Stretch your neck several times a day all the way around in a circle.

3. See if your doctor will prescribe you a TENS unit for home and also if your insurance will pay for it. I have an EMPI TENS unit. Daily use really helps with the nerve pain. Incidently, my nerve pain is worst in my left arm too. About 20 minutes a day really helps if I am disciplined enough to do this.

4. Exercise in a warm water pool - if you live near one, this is a lifesaver for me.

5. Muscle Relaxer Medications - I've taken Zanaflex but didn't like it that much. I now take Soma, 350 mg up to 4 times a day. This medicine is great, but doctors don't like to prescribe it because it is addictive and some people abuse it (by abuse I mean they take 8 pills along with a couple hydrocodone, crazy people that want to die) Flexeril is also a good one, but only at night because it makes you really sleepy, also it makes your memory not that great.... Skelaxin is a great one that I take up to a couple of times a day it, it doesn't mess with your brain at all (though I don't recommend taking it with gabapentin because it slurred my speech even though my mind was clear, people thought I was drunk a lot).

6. Nerve Pain Medicaiton - I've never had much luck with these. Gabapentin works the best as far as nerve pain goes, literally it made my nerve pain go away completely, but each time I took it I also gain 60 pounds, so I am not willing to take it. Perhaps you could try Lyria at a higher dose? Also, another option is Keppra - I had some success with this, but I was taking another med that didn't go well with it. I did lose weight on the Keppra though, so that was a plus for me. I see a neurologist for the nerve pain medication and the muscle relaxers.

7. Botox in the anterior and middle scalene and right pec minor - a non surgical option if you can find someone in your area that does the ultrasound guided botox. I would recommend this before deciding on surgery, because it gives you a good idea of what muscles are actually causing the TOS and what they should be removing during the surgery.

Also, I take Tylenol Arthritis 3 x daily along with Tramadol XR 200 mg, it seems to make this medication more effective.


Don't give up, there are many more options out there for you!!! Keep on fighting!!

I Have commented in red in the quote below.

This last weekend was the worse yet. I was shopping with my family and I picked up a shirt to look at from the rack it was on and my pain level went from normal to a 9-10. It was all I could do to walk to the car. I got in the car and started crying it was hurting so bad. I took 2mg Zanaflex, Ultam 50mg and a Tylenol 3.

We left the store and was headed to a medical clinic that was still open it was around 9:00 Sunday evening. I was going to get see it they could give me a shot of Demerol or something to knock me out. But by the time I got to the clinic the paid had lessen to something I could deal with. I am nervous about getting using pain medicine. I am afraid that I will get use to it and it will not work when I need it, so I try to take the lowest possible pain medicine I can.

I think I am going to try The Center for Thoracic Outlet Syndrome at the Washington University School of Medicine in St. Louis. I have read some articles and reviews about them and it seems like they have experience performing Reoperations for TOS.

tos.wustl.edu is their website.